NBC The More You Know: Disability Awareness

If all you see is the disability…you might be missing a lot. People with disabilities are just people. – Meredith Vieira, NBC News

“The federal government defines a person with a disability as someone who has a physical or mental impairment that substantially limits one or more “major life activities.” According to the U.S. Census Bureau, about 49.7 million Americans have a disability, which includes people of all ages. About two-thirds of these individuals have a severe disability. People with disabilities represent all races, colors and creeds.”

NBC The More You Know: Disability Awareness

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A Love Supreme

lovesupreme

A Love Supreme is a ten minute black and white documentary film produced by Nilesh Patel in 2001. This film was a tribute to Patel’s mother, who lives with rheumatoid arthritis. The goal was to create a record of her skilled hands preparing samosas, in case they became affected by RA in the future.

“Seen on a big screen, the results are astonishing. The peas are the size of mountain boulders. Each slice of potato peel is like a ski slope. Corn juice dripping from a cob has the Adamic beauty of a fresh spring. Spices lie like desert sands. The pastry is kneaded and rolled and peeled by Indumati, whose fingers now appear huge. Her hands become historical texts that tell hard, complicated stories about female labor, migration, domestic economy. We peer at the thick veins and coarse skin, but also at signs of personality and prettiness – bangled wrists, hennaed curlicues. Samosa-making has been transformed into an epic activity.” -Gastronomica Winter 2004

This film is available for viewing at the BBC Film Network. (Real Player or Windows Media Player required.)

I have added a calendar on the sidebar to keep track of events related to disability and the arts. There are quite a few disability film festivals around the world throughout the year, so you might want to check to see if any of them are going to be playing in your area.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

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Changing The Rules Of The Game

As Memorial Day weekend approaches, Rheumatoid Arthritis Guy got to thinking about all of the summer games he used to play when he was a little boy. This was always such a wonderful time of the year! School was over, and the day was filled with endless days of playing outside with other kids in the neighborhood. Meals were mere annoyances that required us to run back into the house and take a break from playing. Best of all, we could stay outside until after the street lamps turned on…now that was the big life!

When we were forced back indoors – either due to the late hour or rain showers – not all was lost. There were board games of all types, such as Monopoly, Chutes and Ladders, Clue, and Parcheesi. I even remember having hours on end of fun with a barrel full of plastic monkeys. I can’t believe I’m admitting this publicly.

And then there was the game that was all the rage when I was young: Twister. With the large plastic mat full of large colored dots and the corresponding spinner, we had so much fun seeing who could get into the most precarious position without falling down.

Of course, this was back then – when all of my joints were still working correctly. Now, the thought of playing Twister does not have the appeal that is used to. (I wonder why…) And think about it: about the only thing the spinner might be good for now would be to add a little spontaneity to my checkups during my visit with my rheumatologist.

Right foot? Swollen.

Left hand? Slight inflammation. Moderate pain.

Right hand? Visible disfigurement in the wrist. Bright red knuckles. Lots of pain.

Left foot? Painful to step on. Lots of heel and ankle pain. Puffy appearance.

So I started thinking – If today I went back to playing the outdoor games that filled my summer days when I was young, what modifications would I have to make to accommodate my rheumatoid arthritis?

Here goes…

Hide and Seek

First of all, the person doing the counting would have to double, maybe even triple, the count. (How does seven-hundred-thirty-three -Mississippi sound to you?) Before I got into any particular space to hide, I would have to remind myself that I have to eventually get out of the space. During the hide, I would have to stay as still as humanly possible – I wouldn’t want any creaking joints to give me away.

Red Light/Green Light

Definitely need to add a yellow light.

Dodgeball

As I already don’t feel like I’m constant being hit by a (lead) ball all the time??? Okay, I’ll give it a try – as long as the person throwing the ball is blindfolded.

Hopscotch

Only if the lines are drawn on the sidewalk with permanent paint. Chalk would be a dead giveaway – too many streaks. None of this one foot thing – both feet are going into every square. And I’m walking.

Jump Rope

I’m not even going there…

Kickball

I should be able to kick, with my ankle guards, heel cups, and power shoes.  Chances are I’ll even hit it out of the park, with my semi-bionic leg and all. But I definitely need a pinch runner (from home base, that is).

Leap Frog

Rules? What was the point of this game, anyways? No point, no play.

Mother May I?

“Mother May I take a giant step, but first may I get my crutches, and since I can’t really take a giant step can I replace it with four of my current steps instead? And am I allowed breaks?” (Rant: one of the most unfair games of all time…if the person was mad at you for any reason, you were practically guaranteed that any request you made – no matter how nicely – would be answered with a “no”.)

Thumb Wrestling

Forfeit.

Quiet Game

Finally, this is my type of game! No modification required. Growing up as one of five kids, shouting and playing in the station wagon (there were no minivans back then) we were such the sucker whenever my mother asked us if we wanted to play the Quite Game. To this day, she still says those were some of her best dollars ever spent…

Is there anything I forgot?

No matter where this weekend may find you, be sure to make it  a great one. Don’t forget that inside each on of us there still is a little kid – so go play!

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

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Voices Of RA: The Caregiver

Today’s post is dedicated to all the caregivers out there.
They are true unsung heroes.

unsung hero

Rheumatoid Arthritis Guy has a partner of almost ten years, who has been by my side during every step of our journey through rheumatoid arthritis. From attending every doctors appointment with me, to picking up the slack around the house, to giving me a shoulder to cry on, to putting up with my moods when I wake up with one of my “angry at the world” moments, my partner bravely faces the challenges of rheumatoid arthritis with me, day by day.

Rheumatoid arthritis impacts not only those of us living with the illness, but it also has a profound effect on those people who are part of our daily lives.

Today, I have asked my partner to write a few words on the caregiver’s perspective of living with rheumatoid arthritis.

There are so many things that I can talk about as the caregiver of someone with a debilitating condition, such as rheumatoid arthritis. But I would like to concentrate on three things that have helped me cope with this lifestyle: 1) allowing myself to experience all of my feelings, 2) recognizing that this illness is not only my partner’s – but mine too, and 3) learning to give myself time to rest.

What do I mean by allowing myself to experience all of my feelings?

As a regular human being, and a person that is in love with an individual that has a debilitating condition, I find that I often experience a full range of emotions that sometimes makes me feel angry, guilty, depressed, selfish, etc.  (Once in a while I go through a series of emotions all at the same time!)

What I have learned by living with my partner, Rhuematoid Arthritis Guy (or should I call myself his sidekick? Maybe…maybe not) is to be honest both with myself and with my partner.

Sometimes I have the right to feel angry, because I might feel neglected or invisible…

Sometimes I might feel guilty, because I might not be there in a time of need for my partner…

Sometimes I might feel depressed, because I cannot see a light at the end of the tunnel…

Sometimes I might feel selfish, because every now and then I want to be the superhero in some of the adventures…

Having all these emotions (and plenty other ones that I don´t have the time to talk about) does not make me a bad person or good person – it just makes me a regular human being. This is something I have had to learn! I have the right to have all these emotions! Once I recognized this fact, I think I became a better caregiver.

So now, I am a just a little better prepared to take part in the adventures of Rheumatoid Arthritis Guy!

On this journey though the land of RA, my partner and I have learned to depend on one another, while facing the fact that both of us are affected by rheumatoid arthritis.  This realization did not come easily (did I mentioned I am a mere mortal?) to either one of us. At the beginning, we both felt isolated from one another.  I guess we both went through all the stages that psychologists talk about: anger, grieving, denial, etc.

But in the end, I think it was easier for me to come to the realization that we both needed to put our battle outfits on if we wanted this relationship to survive. I think that it was easier for me to come to this conclusion – not because I am smarter nor am I a genius – but because I only have to deal with the emotional baggage that rheumatoid arthritis brings to a relationship, and not with the actual emotional and physical anguish that a person with rheumatoid arthritis has to go through every day.

I am happy to say that at this point, we are doing better in the communication department – and we now know unequivocally that we are there for one another.

Last but not least, as my partner continues to learn the importance of rest, so do I.

For more information about caregiving and online support groups for caregivers, please visit www.caregiver.com.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

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More Personal Stories Of RA

Another Alice: An Inspiring True Story of a Young Woman’s Battle to Overcome Rheumatoid Arthritis
Alice Peterson

Jodie’s Journey
Colin Thiele

Send Yourself Roses: Thoughts on My Life, Love, and Leading Roles
Kathleen Turner and Gloria Feldt

Many thanks to Jennifer for suggesting these additional books on personal stories of rheumatoid arthritis.

I have created a new page RA & The Arts where I will be keeping track of resources which combine rheumatoid arthritis and the world of art. This link is available on the top navigation bar.

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